Alpha

Alpha-fetoprotein Screening Program:
Organizational aspects and pycho-social impact (Havana City)

Celia Llanusa Ruiz M.D., Rita Sánchez Lombana M.D., Lidia Rodríguez Peña M.D.

ABSTRACT: As part of a congenital defects early detection program, pregnant women have been screened for elevated alpha-fetoprotein (AFP) levels in Cuba since 1982. We studied 100 pregnant women with elevated AFP levels who were being followed at the Provincial Department of Genetics in Havana, and who were given survey forms to evaluate the organizational aspects and the psycho-social impact of the screening program. The findings indicated that pregnant women should be better informed as to the usefulness of the program-18% of the women studied had received no information on the program, although 93% felt positively about it.

Subject Headings: ALPHA-FETOPROTEIN/analysis; ABNORMALITIES/prevention and control; SCREENING; NATIONAL HEALTH PROGRAMS/organization and management; PRENATAL DIAGNOSTICS/methods; PROGRAM EVALUATION; DATA COLLECTION; CUBA.

Alpha-fetoprotein (AFP) is the principal fetal seric protein synthesized in the fetus' gastrointestinal tract, liver and in the yolk sac. Amniotic fluid and maternal serum levels of this protein can be quantified.¹

Its molecular weight is similar to that of albumin. The literature suggests that AFP may play an important role in the prevention of maternal immune rejection of the fetus.

In 1972, Brock and Sutcliffe found that elevated AFP levels, both in the amniotic fluid and in maternal serum, were associated with neural tube defects. AFP levels have been used ever since for the ante-natal diagnosis of fetal malformations. 3

The screening program for the detection of congenital defects based on the quantification of AFP levels and on diagnostic ultrasonography has been in place in Cuba since 1982. The quantification of AFP levels in pregnant women is carried out between the fifteenth and nineteenth weeks. Patients with elevated AFP levels are referred to a Genetics Service.

Errors in the estimation of gestational age are the number one cause of elevated serum AFP5 in about 20% of pregnant women in Havana. Elevated AFP levels can also be associated with twin pregnancies, threat of miscarriage and low maternal weight, to name a few. Elevated AFP levels were associated with fetal malformations in only 2% of cases, primarily neural tube defects, abdominal wall defects, etc.6

Due to the above and to the fact that a correlation has been found between elevated AFP levels and low birth weight, premature labor, fetal death, fetal distress, etc., AFP is currently considered an indicator of fetal health. A high percentage of pregnant women, as well as a number of Cuban health professionals, are not aware of this fact.

The problems found in over 12 years of screening in Havana, plus results from other screening programs7, prompted us to survey pregnant women seen at the Provincial Department of Genetics, in Havana, in order to evaluate the AFP screening program.

Methods

The survey was carried out by geneticists at the Provincial Department of Genetics in Havana with the help of a psychologist from the National Genetics Center.

One hundred pregnant women with elevated serum AFP levels were surveyed. The patients came from three different municipalities in Havana. The survey forms were handed out to the pregnant women as they arrived and later collected by our secretary.

The objectives of the survey were:

1.To assess the screening program for elevated AFP levels and early detection of congenital defects.

2.To evaluate awareness of the usefulness of the test, the referral method, the psychological impacts of the test and the perceived quality of the service.

Results

The role of primary care services has been crucial for the AFP screening program since its inception. Family doctors are responsible for ordering the AFP test between the fifteenth and nineteenth weeks of pregnancy. Gestational age, family background and home address must be included with the referral, thus facilitating effective management and the adequate evaluation of risk.

Nevertheless, a percentage of pregnant women initially seen have incomplete data, including the absence of a home address in some cases, which makes follow-up difficult. As well, many of the women, being unaware of the different possible causes of elevated alpha-fetoprotein, come to the service in great distress.

Table 1 shows how much information the women had on the usefulness of this test. Eighteen percent of them had received no information from their family doctors, which could be related in the first place to the fact that family doctors themselves were not aware of the usefulness of the test nor of the importance of the screening program, and/or to inadequate physician-patient relations.

Table 1. Information received on the usefulness of the test

^{No information received from family doctors}

18%

^{Partial information received from family doctors}

82%

Ninety-one percent of pregnant women surveyed were given an appointment by either their family doctors or nurses. Only 9% were contacted by other means. Eighty-eight percent considered the referral method appropriate (Table 2). Most of those who hadn't received any information on the usefulness of the test (98.8%), were contacted by either their doctors or their nurses.

Table 2. Referral method used for pregnant women with elevated AFP levels

^{Family doctor or nurse}

91%

^Other

9%

When notified of positive test results and the appointment with the Geneticist, 55 of the patients said they experienced severe anxiety; 27 expressed feeling worried, but were able to wait until the day of their appointment (19 of these experienced anxiety); 37 said they were extremely worried and decided to visit their family doctor for information about the reasons for the referral to the Geneticist (11 of these also expressed feeling anxious). Insufficient information about the AFP test, its purpose and the various possible outcomes were the main causes of anxiety.

Table 3. Psychological implications of elevated AFP levels

^Response

Patients

^{Great anxiety Worry (visited family doctor)}

66

^{Worry (waited until the day of the appointment)}

37

^{No worry}

27

^Total

^130*

* The total surpasses 100 patients because eleven of them showed anxiety and visited
their family doctor and 19 showed anxiety and worry but decided to wait until the day of
the appointment.

By the time of their appointment with the Geneticist, 34% of the women surveyed had not had an ultrasound examination. Forty-one percent of these expressed great anxiety about the appointment Having had ultrasound did not diminish psychological impact in these patients.

Ninety-six percent of the patients reported satisfaction with the attention received at the Genetics Clinic. Ninety-three percent rated the screening program as "good", 6% as "fair", and 1% as "poor" (Table 4 ). All patients rating the program as "poor" or "fair" cited delayed referrals and lack of information. Eleven percent made suggestions with respect to the referral mechanism and delays in return of test results, both of which have improved with the increasingly higher degree of decentralization of AFP testing.

Table 4. Patients' evaluation of the screening program

^Good

93%

^Fair

6%

^Poor

1%

Conclusions

1.The information given to pregnant women on the usefulness and limitations of the AFP levels test for prenatal diagnosis is insufficient.

2.The congenital defects screening program using testing for AFP levels has been evaluated as satisfactory. However, a more efficient, speedy process for reporting results to patients is needed.

Recommendations

1.Offer more information on the purpose and usefulness of AFP testing to pregnant women. both through direct patient education and particularly through the provision of broader information to family doctors on the test itself, possible results and outcomes. Therefore, doctors should inform these patients about the test and the possible results.

2.Use mass media-especially radio and television-to inform the public about screening programs.

References

1.Berne-Fromell. Who declines from antenatal serum alpha fetoprotein screening and why? Acta Obstet Gynecol Scand 1984;6 3:687-91.

2.Milunsky A. The prenatal diagnosis of neural tube and other congenital defects. In: Genetic disorders and the fetus. Diagnosis, prevention and treatment. 2nd Ed. New York: Plenum , 1986, chap 16:453-519.

3.Chuckle H, Wald N. The impact of screening for open neural tube defects in England and Wales. Prenat Diagn 1987;7:91-9.

4.Rodríguez L, Heredero L, Oliva J, Zaldivar O. Prenatal diagnosis by measurements of alpha fetoprotein in Havana City. Prenat Diagn 1987;7:657-61.

5.Rodríguez L, Sánchez R, Hernández J, Carrillo L, Oliva J, Heredero L. Results of 12 years combined maternal AFP levels screening and ultrasound fetal monitoring for prenatal detection of fetal malformations in Havana city, Cuba. Prenat Diagn 1997;17:4:301-4.

6.Bonilla-Musoles F. Determinación de la Alfafetoproteína sérica materna en Obstetricia. In: Diagnóstico prenatal de las malformaciones fetales. La Habana: Instituto Cubano del Libro, 1983, cap 13:277-314. (Edición Revolucionaria).

7.Roelofsen EC. Women's opinion on the offer and use of maternal serum screening. Prenat Diagn 1993;13:741-47.

This article originally appeared in Spanish in the Revista Cubana de Medicina General Integral, Vol. 14, No. 1, (pp. 43-47), January-February, 1998